new to board.... :( need help

Discussion in 'Fibromyalgia Main Forum' started by genesisatabyss, Sep 10, 2008.

  1. genesisatabyss

    genesisatabyss New Member

    Well I feel like no one can help me... I have not felt good for almost 7 months i have gone to every doc. and I honestly think I have FM. Sometimes for 3 -4 days my leg and arm pain is so bad I do not know what to do and it burns. The worst thing is air conditioning it kills me the more layer I wear the better... and by the end of the day my clothes bother me so much. They thought I had anxiety and depression so they put me on medicine... lets just say it did not help...

    Last year I had EBV (mono) and it really i think affected me.... I take hot baths and the pain almost goes away. Sometimes I have twitching in my legs and arms when I relax and my stomach always feels off.... I also out of no where can not drink wine! I broke out in hives. It is so jaw kills me sometimes and then all of the sudden symptoms vanish!!! i went for brain mri it was fine, throid fine! I give up HELP! I am 25 female and getting married in 9 months...

    Can anyone relate??? My current symptoms is my throat it feels like sometimes its closed and i can not breath. Mints help the breathing... let me know. thanks :)
  2. Catseye

    Catseye Member

    You definitely need to keep reading! Rather than hit you with everything all at once, it sounds like you have problems with the immune system and digestion. Because you can't drink wine and you have allergy symptoms. First of all, I would quit all junk food, sodas, and ANYTHING with any form of wheat or dairy in it. That means breads, pasta, ice cream, butter, milk, yogurt, etc.

    xchocoholic just posted about a link that explains how the immune system is centered in the gut and things that can affect it, like gut dysbiosis, which you may have:

    Gluten (wheat protein) and casein (milk protein) are the hardest proteins to digest and cause monumental problems in CFS and Fibro-ers. You can google for more detail, but they both cause inflammation, liver congestion and will keep you sick. Casein overworks your immune system by causing you to make antibodies and then you get hypersensitive to other allergens like cats and pollen. It takes several weeks to get these out of your system. Don't give up wheat and dairy for 2 days, not notice improvement, and go back on them. Go to your local health food store and get gluten free stuff if you have to, and you can use almond milk as a substitute for milk.

    Liver congestion can really mess you up. Doctors will not diagnose or treat liver congestion or gut dysbiosis because they can't treat them. You have to find someone who can. See and becomehealthynow.

    You're not that far gone, you can probably turn it around in a few months if you don't cheat on the diet and take the right supplements.

    good luck

  3. genesisatabyss

    genesisatabyss New Member

    they say i have acid reflux... but my hands and feet are always ice cold and then the pain starts. pain that aches so bad and burning... i guess i have to keep searching :(
  4. kitteejo

    kitteejo Member


    It sounds like CFS/FM to me. To diagnosis that the doctors need to eliminate everything else because we have no test to diagnosis us with. Maybe you need to stick to one doctor and let him/her run you through all the test possible.

    We have all gone through that and then ended up with the CFS/FM diagnosis.

    I have CFID/FM, the ID is Immune Dysfunction. I catch every virus that is within 10 feet from me.

    I also have Gerd so I can relate with that.

    Sore throat, burning legs, soreness, pain, jaw pain and a host of others symptoms point to CFS/FM.

    DON'T GIVE UP, FIND A DOCTOR WHO KNOWS AND BELIEVES IN CFS/FM. Not all doctors do especially the older ones. Find a younger one that had the training about it.

    Good luck to you,

  5. Catseye

    Catseye Member

    That really means you have to change what you're eating but doctors will try to give you things to manage it and not tell you what to avoid that may be the prime culprits, like wheat and dairy. You also may have a problem with stomach acid production, here's a simple test Rich posted about a while back:

    "Stomach acid production is often low in CFS. I think the reason is that it takes a lot of ATP to operate the ion pumps that bring the hydrogen ions into the stomach, against a big concentration gradient. ATP production in the parietal cells of the stomach, which produce the acid, is hindered in CFS because of mitochondrial dysfunction, initially caused by glutathione depletion, in my hypothesis.

    If you want to test to see if your stomach acid is low, you can try this simple test at home: On an empty stomach, such as first thing in the morning, drink an 8-ounce glass of water into which you have mixed one-quarter teaspoon of baking soda (sodium bicarbonate). Using a clock or watch, measure how long it is before you burp. If you have enough stomach acid, you should burp within two minutes. If you haven't burped within 5 minutes, you can stop timing.

    As you know, betaine-HCl is a remedy for low stomach acid, and can be helpful until the glutathione level is corrected, which I believe will eventually happen on the methylation cycle block treatment, and stomach acid production is restored. I can't give individual treatment advice unless a licensed physician is involved, so I recommend that you check with your doctor before using betaine-HCl. Also, if you are trying the methylation cycle block treatment, the betaine may speed up what Dr. Amy Yasko calls the short-cut pathway in the methylation cycle, through betaine hydroxymethyltransferase (BHMT), too much, so this can require a compromise.

    Conventional doctors tend to prescribe proton pump inhibitor drugs in cases of GERD without actually testing to see what the stomach acid level is. This will relieve the symptoms of GERD, but it doesn't help the problems with the overall digestive system, and can actually make them worse. It's better to test first to see what the situation is. There are more sophisticated tests (which also cost more and must be done by a doctor) such as the Heidelberg capsule test. There are also string-type devices that you swallow and pull back out after a while, which change color depending on the pH."

    I wouldn't waste my time and money on a medical doctor to help you with digestion, though, they just aren't capable. See my thread about comprehensive stool analysis for details.

    good luck

  6. yogastyle

    yogastyle New Member

    Hi Genesis. I'm a 25 year old female too. I was diagnosed with fm in July but I had been suffering with the symptoms for almost a year. I started off with extremely sore teeth and jaw aches next I had the burning hands and feet and kept waking during the night with dead limbs. At the start I didn't think that the two were related but anyway things quickly went downhill from there. I'm not trying to scare you off or anything. I just hope that you change your diet and eating habits starting today even if the doctors are telling you that it's not fm. My doctor gave me a whole list of things that could have been wrong with me but it was I who changed my diet. Even when I started feeling better because of my change in diet, my doctor still would not believe that diet and my pains were connected as allergy tests had shown that I was not allergic to anything. It's a big pain in the butt not being able to eat all the things I love but it's a lot worse to let fm take over I can tell you. A few times since feeling great I have tried to eat things with wheat but even one mouthful will start off the pains. I have found as well that stress sometimes brings on the pains (nothing compared to when I eat sinful food) and since you're getting married you probably have a lot of stress without even realising it. Take time out for yourself during the day to just breathe. I know it sounds silly but I took up yoga because I often had the breathing problem. Oh and alcohol is a big no no. A couple of years ago when my symptoms first started, I got migraines and had to be sick whenever I drank beer or wine and then any alcohol. I was off it for about 9mths and then I started to drink it again and i was fine (still no beer or wine). However now that the fm hit me quite badly I've had to stop again and this time for good. My body was trying to tell me something last time around and I didn't listen. Just last week I tried to drink one cocktail when I was out with friends and my pains returned plus I had double vision. Not a pretty picture let me tell you, especially since most of the guys around me weren't lookers. I hope that you get better quickly and that it's not fm.
    [This Message was Edited on 09/11/2008]
  7. gapsych

    gapsych New Member

    Hi, and welcome to the board. I am sure you will find lots of support here.

    Again, welcome.

  8. ellikers

    ellikers New Member

    Welcome! I'm 25 too ... I was diagnosed with CFIDS in 2005 and have gotten completely covered in a short time.

    Hang in there! Recovery is possible.

    There is LOTS of info here on the boards ... if you have a particular interest, just put the words in the search box at the top left.

    Things that helped me are paying close attention to diet, getting quality sleep, taking supplements, vitamins/minerals, and meds to help ease pain and help sleep. Such things won't always "cure" FM or CFIDS but can give your body a boost in feeling better and having a chance to stabilize and heal.

    Welcome welcome!

    P.S. I really like your screenname!